I am not sure if Ocular Melanoma has it’s own ribbon, but I have seen a blue and black one. So even if it is not official, here is my felted version, to show my Awareness of this disease.
Really, this is supposed to be a blog about fibres and soft squishy handmade objects, but we haven’t seen many of them here for a while. I have been knitting and creating things, and to prove it, here are some completed projects to start this post.
The scarf and hat I knit for my husband for Christmas.
And this is a scarf I started in December of 2010, (gulp) and only just finished this week. I had not forgotten the scarf; I would pick it up, knit a little then tuck it away. For two years.
And a felted doll, just playing.
But, I must admit that after visiting the ocular oncologist last month about the freckle on my iris, I have spent a lot of my time learning about Ocular Melanoma, or OM.
This week I went to Santiago to have an ultrasound biomicroscopy scan done of my eye. The doctor did this by numbing my eye then putting a small tube over it which she filled with water. Into this she put a probe to scan my eye. The results will be ready next week, (however, we will probably collect them when we see the oncologist in a few months), but she said the nevus, or freckle, looked fine. Flat, this is a good sign.
Of course, she also said that this will not show if the nevus is benign or malignant. That takes time and observation.
I am finding everything a bit confusing. What I have learned from reading on the internet, and cyber chatting with people on Ravelry, is that Ocular Melanoma is a rare form of cancer, around 2500 cases in the USA a year. OM in the iris is the least common, but with better survival rates. This may be because it is visible and it can be treated earlier. Also, because OM of the iris normally grows slowly, it is sometimes never detected as cancer, and just appears to be nevi. I think that is what the doctor meant when she said I have to wait. There may be malignant cells in the nevus but until they do something different, like grow fast or change colour, nothing needs to be done.
So even though I have been given a green light, and during the day I can accept that I don’t have cancer, in the night it is not so easy. I have been waking up scared and I am trying to turn these feelings around to make changes in my life to stop the cancer from ever coming.
Three months ago I had never heard of Ocular Melanoma, and what a “sneaky” cancer it is. Most people know what to look for with skin cancer, when to have a mole looked at, or the risks they take when smoking. Women know to get regular Pap smears and mammograms. Men know to get their prostates checked. But then there are cancers that sneak up on you; childhood cancers, or cancers that are rare and receive little news coverage.
Ocular Melanoma is rare, but like many cancers, survival rates seem to be improved when the tumours are detected early. A person may have no symptoms and because most tumours are inside the eye only a doctor can see them. Regular eye checks are important.
I know I do not have Ocular Melanoma, (for now my freckle is only a freckle) and so have no right to warn people or give out information, but this is the internet, and if I can help someone searching, and find more information, then I will. (However, remember this is the internet and does not replace talking with a doctor). Here are some links I found useful, although it is all very confusing, and what gave me the most comfort was cyber chatting with people who have OM.
A Cure In Sight – a new charity to help people pay for their treatment. This site has a good list of links for more information.
[Love X Infinity]2 – The Not-Quite-Fairytale of a Cancer Princess, good links and personal perspective.
Interview with Oliver Sacks on Vision, His Next Book, and Surviving Cancer.
Eyes, the windows into our souls.
When I look into people’s eyes here in Chile, I see many shades of brown, sometimes the odd green, but rarely blue. I never realised how different my eyes looked until my husband introduced me to a friend with very pale eyes; I was amazed.
In 2007 my eyes were completely blue. Then one day in 2009, my husband looked at me and said, “you have something in your eye”. It wasn’t something in my eye, it was part of my iris that had turned brown. It didn’t hurt or effect my vision, and unless you looked closely, you wouldn’t even notice it.
It never occurred to me that it could be anything bad. I had never heard of ocular cancer and knew nothing about it until I had my vision tested for new glasses and the doctor examined the brown spot. Cancer of the iris is very rare, and what I have at the moment is a nevus, or a freckle. The doctor in La Serena recommended I see a specialist in Santiago.
So, yesterday my husband I travelled to Santiago to see an ocular oncologist who examined and took pictures of my eye. She also asked for me to have an ultrasound of my eye, which means another trip to Santiago. Then in a couple of months I will go back to see her. She will use the photographs and ultrasound as a base to see if there has been any changes in my eye.
She says my eye looks fine, but needs watching because the spot wasn’t there before. Changes in size or colour is what she is looking for. I think this was growing slowly during 2008, but we didn’t notice it and since 2009 I have not noticed a change.
Before we talked to the doctor I thought she would tell me the brown spot was either something or nothing. Not, for now it is nothing but it could be something.
I am not sure what to tell people. Cancer is the last thing anyone would think of if a friend was having a lot of eye tests. And no one wants to hear or talk about cancer, for obvious reasons. Information on the internet (which is not always reliable), says cancer of the iris is one of the easier cancers to treat, but people hear cancer and get scared.
And I don’t want to scare anyone,
so I don’t have cancer,
I have a freckle.
A freckle that makes me look a bit like a cat, if you get close enough to me.